Henrietta Lacks' family finally gets to have a say

Henrietta Lacks was a 31-year old woman from the Baltimore area who died from ovarian cancer back in 1951. Some cells from her body were taken, without her family's consent, by medical researchers shortly before she died. These cells were grown over time and were used in many aspects of medical research. They became known as the HeLa cells.

In 2010, Rebecca Skloot published a book about how Lacks' cells lived on far past her own brief life entitled The Immortal Life of Henrietta Lacks. Lacks' daughter, Deborah, had become aware in 1974 that her mother's cells were used in research (including the development of the polio vaccine), but never could understand why. Skloot's book revealed to Lacks' family and to the world just how much of medical science was dependent upon this strain of cells.

Skloot's book became a New York Times bestseller and has remained one of the most popular books in the Science Department's collection and throughout the entire LAPL system. However, Lacks' family still had no say over what scientists could do with Henrietta's cells.

Finally, the National Institutes of Health and the Lacks family reached an agreement on protocols for the handling of HeLa cells. Each request to use cells from the HeLa strain will now be review on a case-by-case basis and a representative of the Lacks family will be involved.

In discussing HeLa cells and the agreement forged with the family, Collins and others often use the word “unique”. No other human sample matches the cell line for ubiquity, notoriety or celebrity (Oprah Winfrey is producing a film based on the story). The NIH does not see the deal with the family as a guide to handling other human samples. “It’s not going to be a precedent,” says Collins’ chief adviser Kathy Hudson.

But it will probably inform other cases, she adds. The US government is redrafting rules that govern the relationship between federally funded researchers and participants. New rules aim to give subjects greater say in how their tissues and personal data are used. “Going forward, I’m very much of the mind that the most appropriate way to show respect for persons is to ask,” Collins says. “Ask people, ‘Are you comfortable having this specimen used for future genomic research for a broad range of biomedical applications?’ — if they say no, no means no.”

Skloot's book about Henrietta Lacks is available in audio, e-book, as well as in Spanish, French, and Chinese.

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